One of the things I did say I was going to do, when I picked up blogging again, was highlight some of the ‘other stuff’ I get up to.
An area I’m considering is a Kickstarter Project for Pictures – simply because I don’t have the resources to devote to it yet, but the book really needs written.  In the meantime, I wanted to invite you to something a bit different.

I firmly believe that we’re the sum of everything people don’t see – because if we’re just what people can *see*, I’d be dull, shallow and quite shy.  I don’t look smart – I have poor self-image control and I’m a disorganised mess most of the time.  In fact, I’ll readily admit to spending more time in PJ’s (depressed or otherwise) than I do in any other item of clothing that I own.
My day consists of getting up – writing – editing – knitting if I’m lucky – going to bed.  In between I clean and cook and care for my family, alongside my partner.

But, I never talk (rarely talk) about the writing part on here.
So, here’s some stuff you might be interested in.
I’m a fiction writer.  I teach writing fiction too.  If you’re a fiction writer, you may want to check out The Indie Author Group, (it also has a Facebook group) – and the two Facebook groups, The Indie Exchange and The Indie Marketplace – there’s lots of good resources out there.  Need an editor?  I’m probably your woman – and I don’t charge much either.

If you’re not a writer and you’ve got an e-reader though, things can be difficult.  It’s hard to sort out the wheat from the chaff, and if all you want to do is relax (especially if fiction is your escape, and money is tight) it can be difficult to find good books to read.
So I run a couple of projects to help with that too.
I’ve stopped reviewing publicly – until recently.  But I thought I’d offer some suggestions up.  One is a mailing list, one is a group on Facebook.  Again, you’re welcome to join either or both.  The mailing list will (eventually) get a blog, but for now, it’s just a mailing list where I highlight the books I believe are worthwhile to other readers.

Indie reader Connect is designed around giving indie readers a place to connect with the writers they care about, and discover new ones.  We’re just getting set up right now, but if this sounds interesting to you, jump on board, and let us know what YOU want to see.

And the Facebook group is simply called Indie Readers.  We’re a mostly no author promo area – I’d love readers to come talk about what they want to see and what they enjoy.

And that’s it for this week.  Is there anywhere you’d recommend for getting the buzz on what’s readworthy?

For a while now, and part of the reason that posts are so rare here, it’s just been me writing the content for the site.  And like many others that live the life that I do (freelancer, mom and mental health survivor), the best of intentions get swept under the rug.
The blog used to be all about the stuff that bipolars used to need to know.  It was, in part, about taking control of our lives – and in 2003, when I started, there was no other mental health blog like it.  We didn’t talk about suffering – instead we talked the talk and walked the walk.  We’ve had posts from all manner of people over the years, but I think that it’s about time that we changed the blog to actually focus on what I know about.  My experiences with mental health.

So, in the next few weeks and months, I’ll be rebranding the site entirely.  In part to support the books coming out (yes, there’s books), but mostly so I feel like I can actually say something on the site again that isn’t harping on about advocating for yourself and gives me a more personal connection to what advice I want to give.

So, if there’s anything anyone wants to know, I’d love to hear from you.

How do you cope with anniversaries?

Tomorrow is, historically, a bad day for me.  Those that know my medical history will know exactly what I’m talking about – though, for those of you that don’t, it’s been over ten years since I nearly died.  And then, if that wasn’t enough, something else happened, and lead me to tomorrow.
It’s colored my perspective of everything since.  And left me bereft and confused in many ways.

So, how do you deal with an anniversary that consumes you to the point of pain and never ending grief?  As dramatic and *hand* – *staple* – *forehead* that it sounds, how do you move on?

In one word, you probably don’t.  Ok, that was more than one word.
The problem with moving on is unless you’re actually looking at your life from the perspective of a never ending learning cycle, it’s difficult to relegate or process the feelings on anniversaries without picking up more guilt.  Or, at least, that’s what I’ve found.

Your milage may vary, but I think it’s ok to take a few minutes to sensibly mark the really bad days.  Don’t wallow, but if it’s a major anniversary (and I would suggest that these only come up a few times a year, at most, unless you’ve been really unlucky), then do.

My major milestone is a decade on.  It’s a horrible thing for the mind to do, but I’d been getting meloncholy, but I wasn’t really thinking about why.  And then my partner asked if I was ok, and that was it – everything tumbled down.  It’s a medical thing mostly, and was out of my control, but it still doesn’t leave me feeling any less horrible.

But life goes on.  And in some ways it has.  I live in a new house, in a new city, with a new partner.  But I’m tied into the old.  And while there are some bonds I won’t break – there are some – like the guilt that I felt helpless, instead of actually acknowledging I *was* helpless, has to stop.  Control is a funny thing, and that’s why I think some anniversaries fade with time.  And others remain as raw as ever, years on.

How do you cope with anniversaries?

As it’s the end of an era tomorrow – I’m going to hand in a dissertation that’s been where I’ve been for the last four years.

As this is the case, I’d love to know what you guys would like to see?  Bi-polarbears is one of the few sites that I’ve consistently ran for the last eight years, on and off.  But we’ve changed direction so often that I thought I’d ask the community.

What are you interested in seeing?  More or less on what you’d like to see?

Thoughts on articles and thoughtful op-eds you’d like to see?  Conversations about (x)?  Samples of the book?

Let me know

I know who you are – you’ve just been diagnosed, and you’re thinking that your life is about to end, either metaphorically, or (please don’t do it), literally.

I know who you are, because I’ve been there.  Been there several times.
So, the first thing I want you to do is go grab a soothing cup of *whatever* you love.  You can even have a tiny shot of liqueur in it if it helps, but only a tiny bit.  Don’t drive after, you’ve had bad news anyway, so you shouldn’t be driving.  You’re in shock, and we’re going to fix that.
I’ll wait right here.

You good?  Huggin’ the mug?  I know I was.  For me it was hot, sweet, as strong as I could get it, tea.
Firstly.  Your diagnosis isn’t a death sentence.  It’s not even a commuted death sentence.  Take my word for it when I say that there are some incredibly successful bipolars out there in the world.  Dare I say ‘HI!!!’ now and wave enthusiastically.
Your meds are possibly going to feel like a death sentence for a while – but there is no medical treatment out there that exists that we take that won’t make you feel a bit lousy, at least some of the time.  Unfortunately, the majority of treatments for mental health contain something that makes us dopey.  It might be a receptor inhibitor, it might be a flat-out sedative – whatever it is, go with it for a while.  Be that zombie.  Don’t embrace it because you’ll need to start proactively fighting it soon enough, but it’s perfectly ok to regroup.
Please, remember to drink your comforting drink.  Shock’s a nasty thing.
See, still not dead.
I wanted to tell you something though.  It’s a secret so lean in close.

There is an up side to bipolar disorder – and it’s not the manic phase.  it’s not the fact that we’re treatable and we’re slowly being accepted into society. It’s the fact that….you ready for this….?
This is who YOU are.  Bipolar disorder may not seem like it to many, but it’s possibly part of your personality, and it’s definitively part of the way you see the world – good and bad.  There’s a reason for feeling the way you do, and it’s not that you’re a dick, a douche, or don’t belong. 
More tea ALWAYS makes it better by the way.
Look at it this way – you’ve discovered that you are this *person* living a kind of  lie, trying to remain as ‘normal’ as you can, in a world that doesn’t slow down one iota for people who don’t adjust well.  You could have felt like your world is out of control.  Your world could BE out of control, but it’s not all your fault.  I’m not saying some of it isn’t, but you know, sometimes common sense isn’t what we have when we’re going off the rails.

So – no pity parties – not for long anyway – they have a habit of turning into a national day/week/month of mourning if you’re not careful – and don’t mark today as a negative.  Be kind to yourself, grab another soothing drink – have that cry if you need it, and then – start learning about the ‘new’ you and how to be kind to yourself.
You’ll thank me – and yourself – for it later.

One of the things I’ve noticed about working with people in the mental health community is that most of us are instantly tolerant of the mistakes of others ‘like us’.  There’s a lot of outpouring of support, for example, for Charlie Sheen.  One of the critical problems with this though is that now, anything we talk about to do with bipolar disorder or anything else – for now at least – will also get lumped into feeds for people watching Mr Sheen’s very public mental breakdown.

Let’s be clear about this – I have personally been saying that I didn’t want to ‘bandwagon’ onto the Charlie Sheen ‘stuff’ because it’s cynical at best to grab traffic from someone else’s misery.  It’s also not a cricism of anyone else that has talked about CS on thier blogs, because, lets be honest, smarter minds than me are watching him and have more profound things to say.

What I did want to touch on wasn’t his mental health status (because until he’s diagnosed, he could be detoxing or coming off of some altered mental health state) but how people self sabotage.  I’ve seen a lot of it recently – it might be the pressures of the world right now, or it might be that it’s just more evident right now because the ‘hornet’s nest’ has been kicked over with all of the true and false information kicking around, about manic depression and other mental health issues, but what I’m seeing right now is a LOT of reactionary conversations and information that’s entirely contrary to what’s actually evidence led, especially in terms of treatment.

Many of you will know, especially  by looking at the archives, that I’m very careful not to advise for or against meds, but instead to advise that you do your own research.  I advocate that very strongly actually.  Having done both sides of the fence in the last year, it’s important to let people know that both are valid, and depends more on your situation than the opinions of others.  While medical opinion shouldn’t be entirely discounted, I’m sure that we’ve all met a professional whose opinion we questioned, doctor or otherwise (for example I don’t buy into much of what Dr Phil said or used to say – simply because tough love isn’t always the answer) so advocating that we make sure that we know exactly what the doctor or other health practiconer is recommending is sensible.

There’s two types of self sabotage – and Mr Sheen seems to be involved in the very public version of one of them – alienation of our support structures and surroundings.  It’s of critical importance to understand that these issues are very serious for anyone with mental health issues of any kind – if you lose or alienate anyone that’s around to help you, that’s one less person to turn to when you need support, right?

There’s another kind of self sabotage – where you believe everything you read, or get angry with people for providing an overwhelming amount of information, then weigh all of that, internally, equally.  It’s true, as I’ve said earlier in this post that there are some really smart minds out there, who say some deeply profound things, but it’s also true that there are people, like me, with no formal qualifications that write what we know.  Some of those people don’t even read first, they just let thier fingers run

Not everyone in the mental health community is going to agree with information (and there are a couple of doozies that I’ve got to rebut on here in the next week, because it seems every ‘mental health expert’ with an opinion has come out of the woodwork!) so it’s important to try and limit any of the behaviours that might land us in trouble.  Remember – keep reading and researching!

Editor’s note – this post got quite a lot of attention recently, so I brought it forward to today….

A recent study conducted under clinical criteria highlighted something terrifying for those of us who live with, love someone with, or care for people in our community with bipolar disorder.

(extract)
Relapse and impairment in bipolar disorder

MJ Gitlin, J Swendsen, TL Heller and C Hammen
Department of Psychiatry, University of California, Los Angeles 90024- 6968, USA.

OBJECTIVE: The purpose of this study was to evaluate the outcome of bipolar disorder in the context of maintenance pharmacotherapy.
METHOD: Eighty-two bipolar outpatients were followed prospectively for a mean of 4.3 years (minimum of 2 years); symptom rating and psychosocial outcome scales were used, and pharmacotherapy was rated on a 5-point scale.
RESULTS: Despite continual maintenance treatment, survival analysis indicated a 5-year risk of relapse into mania or depression of 73%. Of those who relapsed, two-thirds had multiple relapses. Relapse could not be attributed to inadequate medication. Even for those who did not relapse, considerable affective morbidity was observed. A measure of cumulative affective morbidity appeared to be a more sensitive correlate of psychosocial functioning than was the number of relapses. Poor psychosocial outcome paralleled poor syndromal course. Poor psychosocial functioning, especially occupational disruption, predicted a shorter time to relapse. Depressions were most strongly related to social and family dysfunction.
CONCLUSIONS: Even aggressive pharmacological maintenance treatment does not prevent relatively poor outcome in a significant number of bipolar patients.

(taken from – http://ajp.psychiatryonline.org/cgi/content/abstract/152/11/1635)

These conclusions are not new – your own Doctor or GP will tell you these things, citing it as the primary reason that you should be placed and stay on medication. Its important however, to note that ‘even aggressive pharmacological mantinence’ doesn’t change this outcome – meds don’t always help. The highest rates of ‘success’ with bipolar disorder come from the patients that understand their mood swings, their reasoning, their reactions – the underlying chemistry that changes their moods, and their investigation into tailoring their own understanding and treatment of their disorder.

Bipolar disorder is debilitating for some people – it can destroy lives, families and support structures that otherwise would survive anything – and its important to ensure that if you, or a loved one, has a mental health issue of any kind, including bipolar disorder, that you are fully informed and can face the consequences, gifts and obstacles of that diagnosis with dignity, pride and preparation.

D Kai Wilson

D Kai Wilson is a writer, artist, and bipolar one businesswoman with an avid interest in bipolar disorder.
Her first book, ‘Pictures in the Dark – a bipolar’s guide to good mental health’ is available today from http://nonfiction.booksbykai.com

Since starting to study psychology at University, I’ve discovered a couple of things about my personality, studies and how though lots of them appear to repeat the same things, over and over again, some do actually pull in information of interest.

I’m going to explain my research process in greater depth in another post, because it works for academic, personal and professional projects, but I have google alert emails daily that post information (news and blog posts mostly) that mention my keywords prominently.  In the ‘bipolar+disorder’ set, I found this link, and wanted to share the underlying idea with you.

The link was called ‘common causes of schizophrenia and Bipolar disorder’ and talks about a study that was undertaken in Sweden and has recently appeared in the Lancet.

What the study found

Though I’ve not seen this study myself (because I can’t access Aleph, the computer’s library from home), it says that there was a statistical link found between those with bipolar disorder and the incidence of schizophrenia, and vice versa.  Net result of the study of 2 million families was interesting, and probably not for the reasons listed in the report.

Of the 2 million studied families, 35,985 (1.7% – or just under 2 in 100) had schizophrenia and 40,487 (2.02%) had bipolar disorder as a confirmed diagnosis.  In total, they amount to less than 4% of the studied group, and yet, they found that there was a link of increased incidence between the two diseases if you have one in your family.

I know how convoluted these studies can be, first hand – and my tutors deliberately teach me to question the information in every study to ensure that it meets both scientific, ethical and common sense standards.  And the question now arises, having looked at the brief abstract, ‘is there an increased or correlatable percentage between the 96% and their chance of developing bipolar disorder?  What diseases make up the ’1 in 4′ percentage that is always so highly vaunted in medical fields, if bipolar and schizophrenia only make up 4% in these studied cases, and most importantly, is there a real world value to this information, other than a statistical link to two diseases that paralyze families?

I’ll let you know what I find out

Image by Shutterhack via Flickr

Steps to happiness

Connect
Developing relationships with family, friends, colleagues and neighbours will enrich your life and bring you support

Be active
Sports, hobbies such as gardening or dancing, or just a daily stroll will make you feel good and maintain mobility and fitness

Be curious
Noting the beauty of everyday moments as well as the unusual and reflecting on them helps you to appreciate what matters to you

Learn
Fixing a bike, learning an instrument, cooking – the challenge and satisfaction brings fun and confidence

Give
Helping friends and strangers links your happiness to a wider community and is very rewarding.

Does this sound like anything familiar?  This is my list every day.

(author’s note – this was written in response to a lecturer questioning why I couldn’t move my appointment for councelling. I think I really upset her, but at least she knew that I could document appropriately – I thought it was worth sharing)

Xposted to Kai@LJ and bi-polarbears
Written, 10th October 2007.

I wrote this entry because I’m of the opinion that people (in general) don’t understand how it feels to be like me. And though this is mainly complaint, I’m going to start with the positive.

Being bipolar is awesome in many ways. It’s something I’ll never change – never remove, because to remove it is to alter, at the core, what I am. I was asked a while back what I’d do if there was a cure for bipolar disorder – and I answered that I liked being bipolar. It sucks when I’m depressed, but I guess that’s my price for being brilliant occasionally. Dave said to me once, that I’m as awe inspiring and bright as a star when I’m at my best. I don’t know if he’s right, but I do know that I see things differently. Colours are, whole experiences for me. Trees are an amazing juxtaposition of terror and wonder for me – I’m scared of the world, on the whole, but incredibly at peace in the heart of nature. Despite the fact that though I see beauty everywhere, it’s incredibly difficult NOT to see danger too.
I think differently too – I tell stories that others just don’t think of – like merry-go-rounds full of corpses, and being shot in the head by one of my characters, cause he didn’t like ‘Mary sues’ – he thought, it turned out, that I was IAB (he’s a police man). And there, I betray my other oddity. I think of my characters as real people, living in my head. It gets slightly schizophrenic in there sometimes – when I’m arguing with my pen names, and my characters. I’ve likened it to a ‘green room’ – and mostly, they wait their turn.

There’s more good to being bipolar than that – my memory doesn’t work well, but I have an unerring ability to see the conclusion of most stories. I’m not always good for that, but most of the time, I see twists coming. I don’t think in straight lines either – I’ve got ‘intuitive’ down to a fine art. One of my counsellors said it was something like parallel processing – I just think I consider things differently.

It’s an unenviable position to be in – knowing, with crystal clarity, exactly how dark things get. How much it hurts, till every breath literally paralyzes me because it’s all I can do without crying. Sitting up in bed makes me cry. Texting a friend and begging them to help me before I do something stupid fills me with shame. Crying in public is about the ‘worst’ of the sins I can commit. I was always told not to make a fuss, not to cry. People aren’t used to seeing others crying in public. We cry in private – just as we hurt ourselves where others can’t see. We do it because we’re already hurting others with our sadness, our inability to interact and be the people they need, so we stay home.

I don’t choose to be bipolar – its part of my genetic code. Therapy – the one that I go to anyway – is designed to teach me ways – not to live with it myself, but to cope with the fact that there are people that don’t understand, or choose not to. Invariably ‘normal’ people think that they won’t ever hit the stage that I’m at. And I sometimes look at them and hope they don’t. It takes a very strong person to survive as a bipolar, and even in my broken state, I’m stronger than most.

And at the same time, I’m weak. I can’t deal with people fussing over me. I can’t stand it for my friends to be put out, but at the same time, I deeply need them. I can’t be alone, but I don’t want company. It’s like having something inside your head throwing a hissy fit no matter what choice you make. Dammed if you do.

The worst of it is the feeling that it’s screaming in there, constantly. There’s this, glassy, numb feeling in my head – like it’s full of ice. Slide down a bit, and my cheeks are burning – it’s either hot, stinging, painful tears, or because I’m mortally embarrassed and trying not to cry. I wish myself dead frequently when that hits me, not because I want to hurt others – but because I want to STOP hurting them.

I’m competitive at the best of times, but when I start falling out of ‘favour’ – either in reality, or because I just don’t understand, that hurts me too. I can’t laugh it off and bounce back now – and I misunderstand and second guess so often it’s hard to get people to actually talk to me. I question everything – from whether the kids are mine, to sometimes, whether life is real. I’ve been known to deliberately do something stupid just to test it – like cut myself. I’m mortally ashamed of that too – perversely though the scars remind me I’ve survived again. Each notch though gets that little bit deeper. I’ve nicked an artery twice doing that and it’s so hard to explain to doctors, cause that’s one of the few cardinal sins of mental health. We don’t hurt others, and if we can help it, we don’t start self harming.
And that’s the thing. It’s not exactly a compulsion. I’m incredibly lucky. I don’t like drawing my own blood, but if it comes down to it, I need some reason for the amount of pain I’m in. If I know there’s something physical there, I can live with it – or at least hang on till I can breathe again without thinking about it.

I’m paranoid too. I get scared that I’m going to burn down the house – or that someone’s coming to get me. I’m highly suggestive – if someone says something to me often enough, even if it directly competes with my beliefs, it’ll stay with me. This means I can be influenced to another point of view, eventually. Worse than that, I actually believe in ghosts and axe murderers and other stuff that, to be honest, is fairly unlikely, but still possible. When the nuclear threat starts ramping up, or they talk about terrorists, I start working out how to get back to David and my children. As far as I’ve worked out, I’ll get about halfway home, if I’m lucky, if it happened at Uni. I’m terrified by that, but I have no control over it, so it’s a fairly moot point. When I’m really having trouble with other stuff though, that starts really bothering me.
Things like leaving the gas fire on – or the cooker – or the boiler randomly exploding, a fire in the garage – a fire next door – a fire in the attic cause of the electrics. Those things I know about and I check for. I wake up about 10 times a night and check the house. Sometimes I just see if I can smell anything in the air. Other times I’ll check the whole house. Where we used to live, I couldn’t hear the rain.
Here, I hear it, and the first time I woke up and it was raining that hard, I thought someone was in the bathroom washing off knives. I couldn’t move for four hours.

That’s called sleep paralysis. It’s also called ‘night terrors’ – something most psychologists think we outgrow as children. It’s got many names – though the most poetic is the Japanese description, kanashibari, which, roughly translated means, bound in metal. I also get the other half of that aspect, hallucinations. Sometimes I forget, but most of the time I remember.

When I’m very depressed, or incredibly stressed, I disassociate. It’s like flicking a switch. One minute I’ll be stammering along – and the next I’ll be gone, completely. I think my nose is bleeding, or at least I’ve been told that I act as if it is, and wipe it, usually till it does. I don’t talk, and certainly don’t recognize people talking to me. And I’m usually inconsolable coming out of it – to the degree that the only way Dave’s found of shaking me out of it – something that a psychologist in Edinburgh corroborated, is getting me to respond to something tactile. It’s a bit difficult to carry my furry blanket around with me during the day, but that’s what worked last time.

The sum of all of this that sometimes I can’t cope with the real world. Not because I don’t want to, but because I don’t want to put people in the position of needing to work out how to handle me. It’s really unfair, but I’ve never met a group of people, on the whole that knows what to do with me. More importantly, I don’t interact well with the bits of the ‘world’ I should, and that distresses my friends. Which is disruptive, which, in turn, triggers yet more guilt in me. So, I usually choose not to put myself in that position willingly – there’s no promising I won’t go there, occasionally, unwillingly, but if I can avoid it, I don’t go out at all when I’m having a bad time, and head home if I know I’m going to be triggered into it. Therapy triggers me a lot. Not always, but often enough to make me cautious.